Telling Our Stories Online: Researching ‘Previvorship’ in the Social Media Era

Telling Our Stories Online: Researching ‘Previvorship’ in the Social Media Era

Summary In this episode of The Positive Gene Podcast, host Sara Kavanaugh takes the mic on the road in London with Dr. Stefania Vicari and Dr. Hannah Ditchfield of the University of Sheffield. Together, they explore how research into social media is reshaping what we know about hereditary cancer, advocacy, and the very word previvor.

Why does this matter? Because our digital footprints tell powerful stories — and understanding them helps us:

  • See how platforms influence stigma, visibility, and advocacy

  • Identify misinformation versus authentic support

  • Recognize the importance of representation and inclusivity in health narratives

  • Give both researchers and clinicians new insight into patient experience

This conversation highlights how essential research is in bridging the gap between lived experience, digital culture, and health care.

Resources & Links Mentioned

🎧 Listen now on your favorite podcast app and be sure to follow on Instagram @positivegenepodcast

Disclaimer: This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.

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Avsnitt(41)

Your Voice Matters: How Patient Advocates Shape Healthcare Policy with TN Representative Bob Freeman

Your Voice Matters: How Patient Advocates Shape Healthcare Policy with TN Representative Bob Freeman

Your Voice Matters: How Patient Advocates Shape Healthcare Policy As patient advocates, we have the opportunity to help shape healthcare policy by sharing our lived experiences with the people making ...

5 Juli 49min

Walking the Genetic Line: Emotional Truths of Hereditary Cancer Risk with Sara Champie

Walking the Genetic Line: Emotional Truths of Hereditary Cancer Risk with Sara Champie

Episode Summary In this episode of The Positive Gene Podcast, Sara Kavanaugh sits down with therapist, BRCA1 previvor, and podcast host Sara Champie for a deeply honest conversation about the emotiona...

21 Maj 59min

The Story That Changed Everything: Diane Hardesty on Lynch Syndrome, Family History, and Prevention

The Story That Changed Everything: Diane Hardesty on Lynch Syndrome, Family History, and Prevention

As we close out Colorectal Cancer Awareness Month, this episode marks the final installment in our series on Lynch syndrome and hereditary cancer risk. If you haven’t yet, I encourage you to go back a...

1 Apr 45min

For Jacqueline: Joan Rush on Love, Loss, and Changing the Future of Lynch Syndrome

For Jacqueline: Joan Rush on Love, Loss, and Changing the Future of Lynch Syndrome

Lynch Syndrome Series This episode is part of a five-part series on living with Lynch syndrome, focused on raising awareness and sharing perspectives from patients, advocates, and organizations workin...

30 Mars 29min

Why Family History Matters: Jennifer Mercer on Lynch Syndrome, Awareness, and Family Communication

Why Family History Matters: Jennifer Mercer on Lynch Syndrome, Awareness, and Family Communication

Lynch Syndrome Series - This episode is part of a five-part series on living with Lynch syndrome, released in recognition of Lynch Syndrome Awareness Day on March 22. Episode Overview In this episode,...

22 Mars 26min

Unbreakable Spirit: Living with Lynch Syndrome, Cancer, and Finding Purpose with JJ Singleton

Unbreakable Spirit: Living with Lynch Syndrome, Cancer, and Finding Purpose with JJ Singleton

Lynch Syndrome Series In recognition of Lynch Syndrome Awareness Day on March 22 each year, The Positive Gene Podcast is featuring a five-part series exploring what it means to live with Lynch syndrom...

20 Mars 40min

Alive and Kick’n: David Dubin on Lynch Syndrome, Advocacy, and Moving Forward

Alive and Kick’n: David Dubin on Lynch Syndrome, Advocacy, and Moving Forward

This episode kicks off a five-part series on living with Lynch syndrome, released in recognition of Lynch Syndrome Awareness Day on March 22. When host Sara Kavanaugh was first diagnosed with heredita...

16 Mars 50min

Cancer Vaccines, BRCA1, and the Power of Storytelling: A Conversation with Aliza Friedlander

Cancer Vaccines, BRCA1, and the Power of Storytelling: A Conversation with Aliza Friedlander

Episode Summary In this episode of The Positive Gene Podcast, Sara sits down with Aliza Friedlander, a BRCA1-positive previvor and advocate with the Cancer Vaccine Coalition. Aliza shares her unusual ...

11 Feb 1h 6min

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